My son is 8 months old. He is having open heart surgery next week and I am so devastated because he’s so little and I am a first time mother that has hardly any idea what’s happening. I am trying to remain calm but as the days get closer I am starting to feel more anxious. I have never experienced death of someone close and to have the thought stuck in my head of the first being my son brings me to nonstop crying. It’s all happening very fast. I was wondering if I any parents have gone through this with their child. What was their outcome? What was the recovery like for your little one? Any and all prayers are welcome as well please.
Help a mama out and respond anonymously on our forum. What can I expect with my 8-month-olds heart surgery?
I have a friend Mary Patton that could answer all your questions! Sending you peace love light and prayer!
Sending you prayers and hugs!
I have no experience in this but mama I want you to put it in your head and heart that your baby will be okay and he will come out of this stronger then ever!!! I wish I could ease your mind
My son had open heart surgery before he was one yrs old. Hes a happy healthy 9 yr old now. What is the surgery for feel free to p.m. I can answer any questions
Why haven’t you talked to his DOCTORs??? There is all kinds of different heart surgeries!!! Do not talk to people about this on Facebook!!!
I have a similar experience with my daughter, she had a cerebral stroke minutes before her birth ( she was in my belly ) I was so scared and devastating not knowing what the consequences that will cause to her life, but the doctors told me not to be scared because babies recover faster than adults.
I’m sending prayers and hugs to you and your baby
My son is a TET baby he has had 4 open heart surgeries his first one at 6 months old. It is stressful but kids are very resilient and heal up way fast. My son is now 27 yrs old and he is surviving with a pigs valve. You can not even tell he is a heart patient. I am sending lots of love and prayersyour way:pray: I wish you the best of luck. What is your babies diagnosis,if you dm me asking?
My son was born with Tetralogy of Fallot and he had corrective surgery at 20 months old, you are welcome to message me for any questions
My granddaughter had her first open heart surgery at 3 months she’s had two more she will have too have them through out her life but she’s a happy 7 yr old and if u saw her u wouldn’t think there was anything wrong with her. They will teach u how to pick your little one up after surgery they’ll give u all the help u need no question is stupid or daft the heart team my granddaughter as at Leeds is fantastic. Sending u love and prayers xx
It’s pretty simple now have e will be in and out and back at home in no time and it’s natural to be nervous, your a parent and that’s what we do.
My grandson had open heart when he was a few months old . Thanks to the wonderful doctors and nurses he is doing great .
Ask to speak with the social worker at the hospital your son is having surgery at. Express your concerns and ask them to explain things etc…they will help you
Praying for your little one.
Children are strong. Procedure have come so far in todays technology. If you have more questions do not hesitate to talk to cardiologist or primary doctor. It is a very stress and hard thing to go through for any parent. But also alway remember you are your son’s advocate. Ask questions!
My baby was born with a heart murmur and at first they talked surgery depending on what looked like at birth. Thankfully cardiologist has just wanted to keep eye on it and hope it will resolve its self and will follow up with him more at age 1. However he unfortunately had other issues from birth until 3 months old. I fought and fought and argued with every doctor I seen that there was something wrong with my son. I was correct. He was born with a hernia his intestines keep slipping in to his testicules. One day they got stuck. So at 3 months old he had emergency surgery to repair a bilateral hernia. Now unfortunately one has not yet dropped so they talking another surgery. Will find out end of month. He is know almost 7 months old.
Everything went great with his surgery. And he woke really quick after they was in shock how fast he woke. We stayed in for observation. And came home next night. He recovered great. Whole new baby right after surgery. He is so happy and loving. The best baby. Pain was gone.
My cousins bub was born with a hole in her heart the size of an old 20c coin (New Zealand) that was double sided, she had open heart surgery quite young as well but I can tell you she’s now a young adult and if you didn’t know, you wouldn’t be able to tell. Every baby is different, but there is hope out there. It’s normal to be so scared and worried though and I hope your little one has a good outcome too. Sorry I’m not much help.
My daughter had open heart surgery at 14 weeks old. Honestly it’s very scary but kids are so resilient. They said my daughter recovery could take 4-6 weeks in hospital. She was home in 8 days. She didn’t even need any blood. They have come so far when it comes to our little babies. Your babe is in good hands.
My daughter had open heart surgery at 16 months. I thougnt I was prepared for it… nope not at all. My daughter had a VSB closed. While they were in there they found another very rare heart issue.
So be prepared for suprises. Dr’s said it woukd be an easy fix and found more issues. Her heart had a hard time finding its Rhythm afterwards so they started talking about medication for the rest of her life to keep the rhythm or a permanent pace maker. It was very over whelming and we had no idea how to handle it. Im not saying this to scare you, Im telling you this because I wish they had told me the possibilities. Her heart ended up finding its rhythm so no meds or pace maker but a heads on what could happen would have been great.
The hardest part for us was the PTSD. She is now terrifed of the hospital and ANYONE in a mask. When we went in for our 6 week check up she screamed in terror for 2 hours. She also refused to have her shirt off for 2 months. We had to start giving positive praise to her scar. She went from never wanting clothes on to screaming when we took her shirt off. I think our situation is a unique one but that was our expirience.
Pleae please please feel free to reach out to me personally for support! You can do it mama.
My son had heart surgery at 2 weeks old. He recovered fast. Baby’s only take a few weeks to get better. I was so scared to touch him because I felt like I would hurt him. But I didn’t! I was able to handle him almost like normal. He’s now 2 years old and doing great!
My son didnt have open heart surgery but did have a procedure done in his heart when he was a year old. He was born with a hole in his heart and they had to go in and put a device to block it. I was scared shitless to be honest. Its natural to be scared for your baby but everything was fine and trust the doctors. Your baby will be OK! Sending prayers
My son had open heart at 2 months old due to aortic stenosis! He’s a happy 5 year old today. You would never know something is wrong with his heart. Heart kids are resilient! Mine was in the hospital for 4 days total. It’s such a scary thing to go through and I’d be lying if I said I didn’t still worry every day, but that’s part of being a mom! Please feel free to DM me with any questions.
So sorry to hear your little one going through this i don’t have any advice just want to wish your son all the best, and hope he has a speedy recovery sending lots of love
Praying for your little boy and for you Momma. God hears a Mother’s prayer’s and knows how much you love your baby.
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Not open heart surgery but my little baby has had a 6 hour operation to close her spina bifida lesion , 2 shunt placement opps, tendon release opp and vesicostomy and each time I’d live to tell you get easier but the fear is still the same , they always have to tell you there is a risk to life but its always very small and babies are super resilient they can get through anything ur wee one will do amazing xx
I was very blessed. My children were healthy. My prayers for your little one and your family.
My son is having surgery in less than a month ( not heart surgery tho) he will be 5 months old, and going in for two hernias. Albeit not near as scary as heart surgery. I’m terrified because he is so tiny and had problems when I was pregnant with him and his sister. He was born at 34 weeks weighing only 3lbs 11oz and he’s not even 12 lbs yet. Not to mention I’m not allowed to feed him 8 hours before. Deep breaths, hugs!
first get death out of your mind and be positive, think only of the best outcome and pray to the good lord to bless your son with healing.
One of my friends her son had open heart surgery as a baby and he’s now I think 14 and doing amazing. My brothers dad had it more than once and has a pacemaker and he’s now close to 40
Sending good vibes. I haven’t been through this but do have a grandchild with medical issues. First off, don’t be afraid to ask questions, ask questions, ask questions! Keep asking till you understand what they are telling you. Write down your questions as you think of them before your appointment. Good luck to you both.
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Children do surprisingly well and they can do amazing things successfully these days. Be hopeful and prayerful.
Prayers my daughter had to have surgery at like a month n 1 week old but that cause she had pyloric stenosis it was very scary as a parent to have to wait in the waiting room until ur child is out of surgery but with my daughter surgery they didn’t know if she would make it n now she is 3 years old n very healthy
My Cousins Daughter had open heart surgery as a baby she’s 24 now Think positive thoughts
Ask questions. I know when Drs come and talk to you your head is already spinning from what’s happening. If you can record conversations with Drs you can go back and listen later. Babies are so tough. They can heal very quickly. Ask at the hospital for a social worker. They are wonderful people to help you through this. Prayers for you and your little one.
Prayers in Jesus name. Listen to the Drs
The best thing you can do is stay positive babies can sense your emotions. Be positive, try to stay calm& keep praying about it. Lots of cuddles before the surgery.& take pictures, create happy moments.
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Children are a LOT stronger than you think. My daughter was 2.5weeks for her first open heart. It’s long, and no matter what you will be worried the entire time and it’s scary afterwords just a warning but it’s all there to help your baby. Her second one was only a yr ago, she was 5. After being discharged, 2 days later she tried climbing a tree.
My son had surfaced when he was 3 weeks old. It was scary but he did fine. I too have thoughts constantly of the bad stuff happening. Deep breaths. He’ll be fine and so will you.
Stop! You are so Anxious and it’s normal, talk to the Dr and Nurse, Listen to what they are telling you,Thank God he can have this lifesaving surgery. Praying for you and your Baby.
The Dr wouldn’t do surgery if he wasn’t sure it would be ok
Prayers and positive energy to you and your son. My oldest son had pyloric stenosis and had to have a pylorectomy at just 3 weeks old. I was a brand new mom and just a teenager at the time. It was gut wrenching thinking about such a tiny little one having a serious surgery. I can empathize. Looking back over 34 years ago…I don’t know how I got through that, but I did. You will get through this. Take time to just breathe deep, pray, and center yourself as often as you need to.
Have you joined Heartkids Facebook group? I’ve found them to be so supportive and understanding as they are full of parents who have been or are in the same position as you are right now. It’s very scary to think of your baby going through such a complex surgery, but the surgeons are so incredible, your baby will be in the best hands. My son had his two open heart surgeries at 3.5 months old and is now a thriving 11 month old it was such an awful, harrowing time. I’m a third time Mum and I was so overwhelmed too. I wouldn’t wish this journey on anyone. You’re not alone. Reach out for support. PM me if you like all the best for your precious baby
Contact the Emerson Rose Heart Foundation. They are amazing people and can be there for you emotionally, spiritually, and can even help you out while you’re in the hospital with your son. I wish I could tell you more but they’re seriously the best and I think could possibly ease your mind some.
My daughter had herat surgery at 7 months old…she did remarkable. They thought she’d stay in the hospital for up to two weeks, but she healed so quick that she was able to leave in about 9 days. She is now a very happy and active 13 year old. She started out with check ups every month, the every three months, then six months, then yearly…and now every two years!
Praying for you and your sweet baby.
My son had heart surgery at 6 weeks old. He had a coarctation repair. They went surgically via thoracotomy. His surgery took a total of about 3 hours. He had a chest tube for about 2 days and was on a ventilator for also about 2 days. During this time he was in the CICU. He moved to the step down unit on the third day. We were back home in a week. It was very scary. He’s 6 now and sees his cardiologist every 2 years (used to be monthly, then every 6 months, then once a year). He’s doing GREAT now. He has a scar Bergeron his ribs from the surgery and a scar from the chest tube. Good luck to you guys!!! Good thoughts your way.
I edited to add that while he was in the CICU we were not allowed to stay with him over night. He was also 6 weeks old and sedated so he didn’t know we weren’t there. Still get that punched in the gut feeling when I think about having to leave him like that.
Just Always KEEP GOD WITH YOU.